Celiac Awareness Month
By: Drs. Helen and Marty Linseisen
May is Celiac Disease Awareness Month. There is widespread misunderstanding and misinformation regarding Celiac Disease. Celiac Disease is not an allergy, sensitivity, or a lifestyle choice. Celiac disease is a serious genetic autoimmune disease that affects the digestive process of the small intestine. When a person with Celiac Disease consumes gluten, a protein found in wheat, barley, and rye, the individual’s immune system responds by attacking the small intestine, inhibiting the absorption of important nutrients into the body. Specifically, the tiny fingerlike projections called villi, on the lining of the small intestine, are destroyed.
Celiac Disease affects people differently. There are more than 200 signs and symptoms of Celiac Disease, yet some people with Celiac Disease have no symptoms at all. People without symptoms are still at risk for certain complications of Celiac Disease, such as cancer. Symptoms may or may not occur in the digestive system. For example, one person may experience diarrhea and abdominal pain, while another person displays infertility or anemia. Some individuals develop Celiac Disease as children, others as adults. Celiac Disease can affect men and women of all ages and races, and it is possible to be diagnosed with the disease at any age. Other symptoms of Celiac Disease include painful joints, fatigue, tingling/numbness in the legs, unexplained infertility or recurrent miscarriages, osteopenia, and psychiatric disorders.
Celiac Disease is more common than most people realize. An estimated 1 in 133 Americans, or 3 million people, have Celiac Disease. By comparison, Alzheimer’s disease affects approximately 2 million people. Unfortunately, it is estimated that up to 83% of Americans who have Celiac Disease are undiagnosed or misdiagnosed with other conditions. The average time a person waits to be correctly diagnosed is six to ten years. Most primary care providers have been taught that Celiac Disease is a rare condition and patients only have gastrointestinal symptoms. Lectures on Celiac Disease in medical schools, even today, are limited.
Patients with gastrointestinal symptoms should be tested for Celiac Disease. However, testing should be expanded to include patients with nongastrointestinal complaints, as less than 50% of patients present with classic gastrointestinal symptoms. Additionally, children older than 3 years of age, regardless of symptoms, should be tested if a close relative is diagnosed with Celiac Disease. Anyone with an automimmune disorder such as Type 1 diabetes, thyroid problems, Addison’s disease and genetic syndromes like Down’s syndrome should be tested periodically. Women who experience persistent miscarriages or infertility without a determined medical cause should be tested as well. Diagnosis of Celiac Disease initially requires blood tests to measure levels of certain antibodies. If antibody tests and/or symptoms suggest Celiac Disease, the diagnosis needs to be confirmed by an endoscopic biopsy procedure.
The only treatment for Celiac Disease is a 100% gluten free diet for a lifetime, avoiding all foods that contain or come in contact with gluten. Ingesting any gluten, no matter how small an amount, can damage the small intestine even without having noticeable symptoms. The gluten free diet requires a completely new approach to eating that affects a person’s entire life. Individuals with Celiac Disease must be extremely cautious with each food or product purchased, where they eat and how the food is prepared. Gluten is often found in cosmetics, medications, household products, food fillers or thickeners, and many processed foods. Even if a product does not contain gluten, it may have gluten due to cross-contact which can occur at many stages of product production. Despite the increase in gluten free food options, many times foods labeled “gluten free” are not safe for those with Celiac Disease to consume. Frequently, food items are processed in facilities that produce wheat products, putting people at risk for cross contact. Thus, living with Celiac Disease has a significant lifestyle burden. Those with Celiac Disease report a higher negative impact on their quality of life than do people with Type 2 diabetes, congestive heart failure, hypertension, and inflammatory bowel disease.
Despite restrictions, people with Celiac Disease can eat a well-balanced healthy diet. The gluten free diet can seem overwhelming at first. Support and education are essential to avoid isolation, to foster safe inclusion in social gatherings, and to promote overall health. With time, patience, and guidance, living with Celiac Disease can become easier, with the ability to lead an active and healthy lifestyle.
Anyone who has accompanied a loved one to an emergency room knows how challenging it can be to navigate the medical system. Its complex language, daunting costs, and frenetic pace make it difficult for the average person to take in. If the patient has no one by their side and if they are dealing with two or more chronic conditions — plus poverty, food insecurity, and unstable housing — they face even greater challenges in navigating the healthcare system.
